Transcript Communicating with Family & Friends about Your TBI

Teaching Patient Advocacy:
“Communicating with
Family & Friends about
Your TBI”
Helen Mathison, MA/CCC-SLP
Allison Carolan, MS/CCC-SLP
Hennepin County Medical Center
April 10, 2015
Disclaimers
The Great Semantics Debates:
Patient versus Person
Mild-Complicated vs. Mod/Sev TBI
INSPIRATION
Patient Care:
17 years combined experience working with mild-moderate TBI
Patient and Family Interviews:
• 8-10 over 4 year period
Focus Groups
• 2013: TBI Patient Roundtable:
• 11 Patients with mTBI, 1 family member.
•
•
•
2014: TBI Patient Roundtable:
Acute TBI patients discharged to LTAC or Knapp Rehabilitation Center
(Acute rehab).
5 Patients, 4 family members
Living Well with Brain Injury Support Group
Framework for Successful PatientFamily-Friends Communication
Teach Patient Self-Advocacy Skills
Teach Family Supportive
Communication and Roles
Teach Patient Self
Advocacy Skills
Become aware of unique aspects of your brain injury
Learn how to communicate effectively
Make the invisible become visible by engaging family
Learn how to continue to talk and share
Become aware of unique
aspects of your brain injury
Remind yourself that each TBI is unique &
that you need to share what yours is like
Write out your symptoms, triggers & useful
strategies
Write out differences between the “old
you” and the “new you”
Learn how to
communicate effectively
Practice scripts
with your
therapist
Role play in
therapy
Keep a list of
helpful references
(books, blogs,
websites) handy
Keep copies of
what is helpful &
what is not
become visible by
engaging family
Ask if they have questions
Tell them what you CAN do instead of saying no to an
activity that won’t work
Invite them into your therapy
Ask providers to write information down
Learn how to continue to
communicate and share
Practice self
advocacy as part of
the new you
When it doubt,
write it out
Share websites or
articles that fit
with your own
injury
Post links about
brain injury to
your favorite social
media sites
Teach family supportive
communication and roles
Benefits
Cautions
Unhelpful
Communication
Helpful
Communication
Benefits of successful
family involvement
Supports follow through of home exercises
Helps recall details of sessions
Helps with symptoms logs, doing home tasks & navigate insurance
issues
Helps family gain insight into challenges
Offers additional perspective to providers
Precautions to take into account
for successful family involvement
Remember that patient-family relationships and communication
patterns were developed before the TBI occurred
Not all families are equally able to benefit
Not all family interactions are conducive to healthier outcomes
Patients/families who want to engage in support are most likely to
benefit from it
Facilitating Healthy
Family Involvement
Tap into family strengths & address family barriers to selfmanagement
Develop specific roles for family members
Give family members skills and tools to carry out roles
GOAL: improve patient health by helping family members
to be powerful patient allies
Increasing Family
Involvement
Assess current role of family members in patient’s
management of TBI
Help patients & family develop set roles can lead to
concrete action
Help them learn how to plan ahead for stressful situations
Teach communication techniques that will help them be
more effective at helping patients
techniques linked to
poor outcomes
Controlling/directive statements
“You should join us for the Super
Bowl Party. There will only be 15
people this year.”
“You know you can’t do that computer
project yet.”
Criticizing
“I don’t know why you started those
long walks last week. I don’t
understand you.”
Using guilt
“You should be grateful—I worked so
hard to get the groceries and clean the
house. Don’t you want to get better?”
techniques linked to
poor outcomes
Being overprotective of patient
“I don’t think you should go on that
church trip—what if you get a huge
headache and can’t do anything while
you’re there?
Taking responsibility for patient
behaviors or outcomes
“I can’t believe I let your headaches
get that out of control. I should have
reminded you each day & called the
clinic.”
Ignoring or downplaying symptoms
“Let’s not talk about your headaches
and fatigue again today. I’m sure it’s
not really that bad.”
techniques linked to
better outcomes
Show empathy for patient’s point of
view
“I know it’s hard during the holidays
to be around so many people all
talking at once.”
Show concern
“You seem really tired today. I’m
concerned about you.”
Offer choices and alternatives
“Should we go shopping this morning
or afternoon?”
“Do you want to find a quieter
restaurant?”
Provide reason for advice given
“It seems that you have an easier time
concentrating when we’re at a quiet
place.”
techniques linked to
better outcomes
Openly discuss brain injury &
directly address conflicts about care
“This is the 3rd time you forgot to
take your headache medicine. We
need to plan so it doesn’t happen
again. I have some ideas but first do
you have any ideas that will help?”
Ask about patient’s experience and
develop accurate perceptions of
patient’s feelings and abilities
“What does it feel like when you feel
overwhelmed?”
“Now that you’ve been taking
scheduled breaks, do you still get
overloaded?”
Focus positively & realistically on
successes
“Two months ago you couldn’t even
go into Target. Now you can go there
when it’s quiet in the morning.”
Continue to plan pleasant activities
together as a family
“Going to that rock concert at Excel
will really ramp up your symptoms.
Why don’t we go listen to that
acoustic set instead?”
Conclusion
Successful PatientFamily
Partnership
Patient has
awareness & self
advocacy skills
Family has
supportive roles &
communication
Student Issues
(Elementary- Secondary)
Patient
Educators
Parent/ Family
Liaison
Social Worker
Guidance Counselor
Medical Team
Student Issues
(Elementary- Secondary)
Common Advocacy and Education Goals
for all “Spokes”
• What are the diagnoses
• What are the written accommodations
• What are the medical
recommendations and restrictions
(and who enforces these)
• What are the compensation strategies
Real World Problems
(And why communication is key)
• Educators are busy and may forget
accommodations.
• Educators occasionally have pre-injury bias toward
a student or a diagnosis (case examples)
• Educators may not understand the purpose for
accommodation and medical providers do not
provide this out of respect for privacy.
• Students do not communicate or self-advocate
• Parents do not know what questions to ask or what
role to take on.
The goal is clear communication.
The student is the primary feedback catalyst. It’s important to ask the
right questions because most high school students are not excellent at
self-advocacy.
Therefore, it is crucial to arm the student and parent/family with
knowledge, skills, and language for basic self-advocacy at the high
school level.
A Conceptual Framework
MD gives medical
restrictions and
accommodations,
referrals to
therapies.
Therapists evaluate and make
additional recommendations for
accommodations, restrictions, and
compensation strategies. This is
an ongoing process and
recommendations may change
over time.
Social Worker/ HCMC liason
contacts school counselor or 504
coordinator and provides
education re: accommodations
and restrictions
Parents and
students
encouraged to
provide feedback
and reminders to
school and
medical team as
necessary re:
accommodations,
restrictions.
School implements and
contributes to plan,
provides feedback and
questions
Advocating to Educators
• Method: 504 Plan/ Meeting
• Language: (Above 5th grade level)
o Diagnosis
o Restrictions,
o Accommodations
o Compensation Strategies/ Recommendations
With a better comprehension of the diagnoses, the
“why” for accommodation should become more
clear, and the “buy in” of educators improves.
Advocating to Educators
• Method: Letter from Medical Team
• Language: Diagnoses, Restrictions, and
Accommodations (rarely compensation
recommendations)
Limitations: Privacy Laws
- Include Liaison contact information for questions
An OK Letter:
Advocating to Educators
To Whom it May Concern:
• Method: Letter from Medical Team
Bobby sustained a mild Traumatic Brain Injury on 3/10/2015. Since
• time
Language:
Diagnoses,
and Injury Team at
that
he has been
followed byRestrictions,
the Traumatic Brain
Accommodations (rarely compensation
HCMC.
recommendations)
Bobby is restricted from participating in Gym class and Track and
Field until re-evaluated and cleared by MD.
Limitations: Privacy Laws
Bobby
has been
given the
following
accommodations
for his brain
- Include
Liaison
contact
information
for questions
injury:
1)
2)
3)
4)
5)
Lecture notes printed ahead of class as available
150% time to complete tests
Staggered due date option for multiple tests on the same day
May pass 5 minutes early from class
Allow 5 minute breaks during block scheduled courses
A Better Letter (with education)
An OK Letter:
To Whom it May Concern:
Bobby
sustained
a mild
Traumatic Brain Injury on 3/10/2015. Since that time he
To
Whom
it May
Concern:
has been followed by the Traumatic Brain Injury Team at HCMC.
Advocating to Educators
• Method: Letter from Medical Team
Bobby
sustained a mild Traumatic Brain Injury on 3/10/2015. Since
Due to his ongoing symptoms, Bobby is restricted from participating in Gym class
• time
Language:
Diagnoses,
and Injury Team at
that
he
been
byRestrictions,
the cleared
Traumatic
Brain
and Track
andhas
Field
untilfollowed
re-evaluated
and
by MD.
Accommodations (rarely compensation
HCMC.
Bobby
has been given the following accommodations for his brain injury:
recommendations)
Bobby is restricted from participating in Gym class and Track and
1) Lecture
printed ahead
class asby
available
Field
until notes
re-evaluated
and of
cleared
MD. to minimize visual shifting
and light sensitivity
from smart-board
Limitations:
Privacy
Laws
2) 150% time to complete tests to allow time for pacing breaks at his desk, and to
Bobby
has
been
given
the
following
accommodations
for his
brain
- Include
Liaison
contact
information
forattention
questions
allow
time
for
him
to use
compensation
techniques for
impairment
injury:
(double checking items etc)
3) Staggered due date option for multiple tests on the same day, to allow
adequatenotes
pacing,
encourage
use of
study techniques via ample
1) Lecture
printed
ahead
ofcompensatory
class as available
study time
time, and
to promotetests
better sleep, which is imperative for full recovery
2) 150%
to complete
from TBI
3)
Staggered
due date option for multiple tests on the same day
4) May pass 5 minutes early from class to prevent overstimulation and dizziness
4) May
pass
5 minutes
from
class
in busy
hallway
due to early
his visual
and
vestibular deficits secondary to TBI.
5)
minute
breaks
during
scheduled
5) Allow
Allow 55minute
breaks
during
blockblock
scheduled
coursescourses
to prevent or minimize
post concussive headache. If headaches become severe he may need to be
The Benefits of a
“Better Letter”
• Students and parents get a copy
• Students and parents are armed with the
appropriate language: Diagnoses,
restrictions, accommodations, and “why”
• Guidance counselors and Social Workers
or liaisons are armed with the same
language
• Educator bias is decreased
Self-Advocacy at the
College Level
College students with brain injury deal with more than
just academic difficulties.
College Students and TBI
• Advocacy:
o Student Disability Office- Establish Connections
o Medical Team write Letters of Support for
Applications and Accommodations.
College Students and TBI
Communication with Peers:
• Arm patients with the correct information and language,
practice retrieving the facts and formulating the words.
* What types of places increase symptoms after a TBI?
* Why can’t they be physically active?
* How much rest do they need?
* How long might it take before a person with a TBI can
resume normal activities?
* Why can’t a person with TBI return to work, or when might
they be able to work again?
College Students and TBI
Roommates and Friends:
How Can I Help?
Clinicians Can Help
• I wish my friends were more educated about my condition so
that I don’t have to keep explaining it.
• I wish that my friends would ask me more questions about my
injury, treatment and recovery.
• Ask me directly what they can do to help. Each person is
different.
• Be patient with me and my restrictions. Recovery takes time.
• Plan activities that we can do together that are quiet and short
in duration, and that follow my activity restrictions.
• It helps to know that others truly understand my condition and
the recovery process.
College Students and TBI
Further considerations:
• Almost everyone wants to feel “normal,” especially in
College
• Challenges of new environment, more difficult classes,
autonomy
• College student habits, lifestyle, and identity is not yet well
established
• Lifestyle not yet well established
• Patients are people and should be treated as a whole, not
just as an employee or student. Help patients advocate in
social, romantic, and recreational settings too.
CONCLUSION
Patients, families, friends are an integral part of, and influence
on, the recovery process. Communication is complex, but
crucial.
Advocacy can happen at multiple levels, and clear
understanding of roles is key.
Every patient has a right to understand and possess the
language to describe his/her unique injury. It is our job as
medical providers to teach this information and ensure
comprehension.
Nine Things NOT to Say to Someone with a Brain Injury
Marie Rowland, PhD, EmpowermentAlly
1. You seem fine to me.
2. Maybe you’re just not trying hard enough (you’re
lazy).
3. You’re such a grump!
4. How many times do I have to tell you?
5. Do you have any idea how much I do for you?
6. Your problem is all the medications you take.
7. Let me do that for you.
8. Try to think positively.
9. You’re lucky to be alive.
From Brainline.org: 10
things people with a brain
injury would like to hear
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
I'm sorry. How can I help?
Please tell me what having a TBI is like. Can you tell me where I can
read more about TBI?
I don't know how you feel, but you are my friend and I will always be
there for you.
I admire your willpower. You will get through this.
I know I don't understand what it's like, but I will try my hardest to be
patient and understanding.
Take your time — we are not in a hurry.
When are you going grocery shopping, I want to go, too. Or, what yard
work can I come do?
I don't know what to say but I'm sorry it happened to you.
The you that is YOU hasn't changed. You just have a harder time
thinking than you used to.
I will bring you some delicious healthy brain foods and snacks — and
come to sweep and do laundry, but don't worry, I won't stay too long.
Lost & Found: What Brain Injury Survivors Want You to Know
Barbara J. Webster, Lash & Associates
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
I need a lot more rest than I used to. I’m not being lazy.
My stamina fluctuates, even though I may look good or “all better” on the outside.
Brain injury rehabilitation takes a very long time; it is usually measured in years.
I am not being difficult if I resist social situations.
If there is more than one person talking, I may seem uninterested in the conversation.
If we are talking and I tell you that I need to stop, I need to stop NOW!
Try to notice the circumstances if a behavior problem arises.
Patience is the best gift you can give me.
Please listen to me with patience.
Please have patience with my memory.
Please don’t be condescending or talk to me like I am a child.
If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my
brain.
If I seem “stuck,” my brain may be stuck in the processing of information.
You may not be able to help me do something if helping requires me to frequently interrupt what I
am doing to give you directives.
If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem
like I have OCD — obsessive-compulsive disorder — but I may not.
If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of
the extraordinary effort it takes to do things now.
We need cheerleaders now, as we start over, just like children do when they are growing up.
Don’t confuse Hope for Denial.
Created with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA.
References
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2.
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4.
Rosland, A-M. (2009, August). Sharing the Care: The
Role of Family in Chronic Illness. Retrieved from
http://www.chcf.org.
Rowland, M. (2013, September). 9 Things NOT to Say to
Someone with a Brain Injury. Retrieved from
http://www.brainline.org.
Brainline.org. 10 Things People with a Brain Injury Would
Like to Hear.” Retrieved from
http://www.brainline.org/content/2013/09/10-thingspeople-with-a-brain-injury-would-like-to-he.html.
Webster, B. (2011, July). Lost & Found: What Brain Injury
Survivors Want You to Know. Retrieved from
http://www.brainline.org.